On the weekend of October 25th, we had a wonderful family visit! Gran, PawPaw, Great-MoMo, Aunt Joyce, and Aunt Patti all came down to visit us. They got here on Saturday morning and left Sunday. We had such a great time playing, visiting, and going out to eat. It was a short visit but we had a lot of fun. Avery & Kenadee love to have company! Here's a picture from Sunday, October 26th when our company was about to leave: The very next day, on Monday, October 27th, Avery had to go to Cooks to be admitted for observation. Since she was about 5 months old, she had slowly quit drinking her formula. It was gradual at first, only wanting a little less than usual, so it wasn't too alarming. But by the time she was about 6.5 to 7 months old, she'd basically stopped drinking her formula altogether. Only receiving approximately 10 oz per day (regardless of how much we tried to get her to drink it), she wasn't getting enough calories with her jar food alone, and she began losing weight. While we were in the hospital, her GI-tract doctor ran test after test trying to find a cause for her refusal to drink milk. After an Upper-GI and an Endoscopy (EGD), he said there was nothing abnormal or anything to be alarmed aboug health-wise that could be causing her not to want to drink her milk. Knowing that Jason had severe allergies as a child, and couldn't have any milk products until the age of 7, the GI-tract doctor said he was pretty sure it was probably just a milk-protein allergy. His solution was to send her home from the hospital with a feeding tube down her nose, put her on a special hypo-allergenic formula (that costs 60 bucks a can and lasts 2.5 days!!!!!) and see how she did. He said that if it were a milk-protein allergy, once she realized that this new formula wasn't going to hurt/upset her stomach anymore, she'd begin to drink it like she used to. Her follow-up appointment with this doctor was not until Tuesday, November 25th, the Tuesday before Thanksgiving. Based on her progress or lack thereof, he'd make a decision that day as to what we had to do next. Here is a picture of Avery on the day he released her from the hospital (which was Halloween):
Since Avery & Kenadee were at Cooks on Halloween (we got to go home late that afternoon), and their original costumes we'd bought were at home, Cooks donated some costumes for them to wear (we got to keep them). They had trick-or-treating in the atrium at Cooks for all the kids. The costumes they gave us were "Two Peas in a Pod". Here's a picture:
Once we got home that day, we were able to go to part of Daddy's football game that night, and since it was Halloween, we wore our original costumes to the game. Here's a picture of Avery and Kenadee dressed as little lambs:
After being home for a month with a feeding tube, we went to the follow-up appointment with the GI doctor. Avery had made zero progress with her eating. Every feeding, we would first offer her the bottle by mouth. She would only drink an ounce or two and then refuse the rest. So, what she wouldn't drink by mouth had to be put into the feeding tube. At the follow-up appointment, her doctor said that since she hadn't made any progress, and since she has to have the formula, he was going to have to surgically put in a stomach button. We went back to Cooks for another 3-day visit this past week and her surgery was on Wednesday, December 3rd. The feeding tube could only be down her nose approximately 4-5 weeks because after that long of a time, it starts to mess up your nasal septum. The stomach button that she now has is more long-term. The doctor said he would leave it in a minimum of a year, even if she only uses it for the first 6 months. Avery made it through the surgery just fine, and her stomach button is not infected or anything, but she was in a lot of pain afterwards. With the exception of a few short naps, she screamed her head off for the first day and a half. Now that it's been in for a few days, she's doing much better, but she's still extremely sore. The soreness should be gone in a week or so, and then life should resume as normal (if we remember what normal is). The stomach button works a lot like the feeding tube. We have tubing that we use to feed her. When it's time for a meal, we offer her a bottle and what she doesn't drink we put in her stomach. It has a cap on her tummy that we open, plug a tube up to it, and pump the formula in. She seems to be doing great now, and I'm sure it'll be a whole lot better when she is less sore.
After being home for a month with a feeding tube, we went to the follow-up appointment with the GI doctor. Avery had made zero progress with her eating. Every feeding, we would first offer her the bottle by mouth. She would only drink an ounce or two and then refuse the rest. So, what she wouldn't drink by mouth had to be put into the feeding tube. At the follow-up appointment, her doctor said that since she hadn't made any progress, and since she has to have the formula, he was going to have to surgically put in a stomach button. We went back to Cooks for another 3-day visit this past week and her surgery was on Wednesday, December 3rd. The feeding tube could only be down her nose approximately 4-5 weeks because after that long of a time, it starts to mess up your nasal septum. The stomach button that she now has is more long-term. The doctor said he would leave it in a minimum of a year, even if she only uses it for the first 6 months. Avery made it through the surgery just fine, and her stomach button is not infected or anything, but she was in a lot of pain afterwards. With the exception of a few short naps, she screamed her head off for the first day and a half. Now that it's been in for a few days, she's doing much better, but she's still extremely sore. The soreness should be gone in a week or so, and then life should resume as normal (if we remember what normal is). The stomach button works a lot like the feeding tube. We have tubing that we use to feed her. When it's time for a meal, we offer her a bottle and what she doesn't drink we put in her stomach. It has a cap on her tummy that we open, plug a tube up to it, and pump the formula in. She seems to be doing great now, and I'm sure it'll be a whole lot better when she is less sore.
Avery & Kenadee have had a lot of changes the last couple of months. Avery has four teeth! Two top, two bottom. Kenadee has two teeth on the bottom. Kenadee has started saying, "Da-Da" and is crawling all over the place. Well, it's more like an army crawl, but she can get from one side of the room to the other in 0.2 seconds! The girls also really enjoy playing with each other and taking baths together. They've started kicking and playing in the tub and smile and squeal all the time. Here is a bath picture:
Well, I know this has been a really long post, but I wanted to explain to everyone what all had been going on with us, and let you know why I hadn't updated. Truthfully, I thought of updating several times, but I couldn't quite bring myself to have to post pictures with Avery in her feeding tube. At least now with her stomach button, she gets her face and arms back (she always had tape all over face holding the tube in place, and arm boards on her arms to hold them straight all day and night so that she couldn't bend her arms and reach her face to pull her tube out). Now she gets her face and arms back and can play and learn to crawl as good as her sissy.
Well, I know this has been a really long post, but I wanted to explain to everyone what all had been going on with us, and let you know why I hadn't updated. Truthfully, I thought of updating several times, but I couldn't quite bring myself to have to post pictures with Avery in her feeding tube. At least now with her stomach button, she gets her face and arms back (she always had tape all over face holding the tube in place, and arm boards on her arms to hold them straight all day and night so that she couldn't bend her arms and reach her face to pull her tube out). Now she gets her face and arms back and can play and learn to crawl as good as her sissy.
Thanks to all of you who have been praying for us. God has heard your prayers and has truly blessed once again. I'll do better with updating from here on out! That's it for now...
2 comments:
OH MY GOODNESS, I had no idea. I sit here with tears knowing the kind of fear you feel as a mother with you baby going under for surgery. I will be thinking about you all and praying that all this is over and done with soon. Thanks for letting us know everything. Kiss those girls for me!!!
Jackie
Goodness, I'm so sorry you had to go through all of that. Parenting can be so hard! I'll be praying for you guys! I hope you have a great Christmas! Love ya!
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